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Old 02-17-2013, 04:17 PM
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
Location: Michigan
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Conductor71 Conductor71 is offline
Senior Member
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Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default More than one Goliath

Quote:
Originally Posted by Stephen Friend Sage View Post
Thanks to Bob Dawson I have joined your community because I feel the time is now for patients to push harder - to ask their own questions and to push researchers to share their data sooner.

At Sage we are gaining a foothold in several communities thanks to help from the RWJF. Originally we had hoped patient with Parkinson's would want to start a longitudinal study that had them sponsoring each other to build up a deeper more interactive way of probing the disease. Don't know if that interest is still there.
Dr. Friend,

Thank your for reaching out to us! It is so nice to know that there are scientists who have the courage of their convictions; I cannot imagine it easy to speak what you believe so openly, especially when many others around you see little need to change.

This is the first of a few questions I want to ask; it's not often we have researchers joining us, so I am taking full advantage.

As I listened to your talk I could not help but think of the Aaron Swartz tragedy; I see him as one of our unsung heroes. In my mind, his trial is an example of one of the major impediments to translational and patient led research that is the corporate ownership and control of information by academia, publishers, and database services. The case involving JSTOR, MIT, and Swartz are a prime example of what we are up against when trying to participate in our own care. It is ludicrous that patients hit paywalls having to pay for what is 'often publicly funded research. Is MIT's decision to go on with the prosecution an example of corruption of denial? Where do you see the role of information control in your vision for a better research process?

Finally, I wanted to add that the professional associations of our doctors can work against us; especially with PD which has a fairly high misdiagnosis rate. With us, the American Academy of Neurology sets forth guidelines on diagnosis and treatment; they can end up becoming rules or dogma written more for doctor benefit than patient. There are so many competing interests. It feels like David has to conquer more than one Goliath to make this happen.

Laura
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